How I “C.H.A.R.M.” Myself Through the Holidays Living with ALS

 

For most people, the holidays are a time of joy and good cheer. But when living with ALS, or providing care for someone who does, holiday activities have the potential to add stress to an otherwise happy season. Over the past 12 years of living with my ALS, I’ve come to rely on a simple list of wellness behaviors that help me navigate the challenges ahead. I call it the “C.H.A.R.M. list,” and I’m sharing it with you here, along with a few examples from my own holidays gone by.

C = Clear Intentions & Expectations

Being up-front with yourself and those around you helps to prevent possible misunderstandings and hurt feelings later on.

First, spend some time on your own to think about all the holiday activities you might be involved in. Decide which activities are essential and which are not as important. Then, share this holiday bucket list with your caregivers and/or family. Strive for an open and honest discussion together. Take into consideration issues such as transportation, time of day, special accommodations, weather, and of course, everyone’s energy levels.

Sometimes alternate solutions can be found that satisfy everyone’s wish!

A home-cooked meal and family gathered around the table can make Thanksgiving a special memory. But having ALS meant I could no longer cook the big meal. So, we decided to order the pre-cooked dinner “with all the trimmings,” provided by our nearby grocery deli. It was delicious, made the whole day easier, and was something we’ve done over and over. 

H = Humor Saves the Day

Even the best-laid plans can get muddled.

People simply forget, the weather intervenes, or cold and flu bugs surprise us at the worst of times. Try to find humor in each situation. Be the first to laugh and encourage others to do the same.

Understand that family and friends may be under their own stress just trying to make things perfect for you. Laughing releases the tension all around. And sometimes, the best memories are the funny ones.

I often break the ice at social gatherings by poking fun at the fact that I need a rollator to help me walk, plus I have speech issues. When offered an alcoholic beverage, I’ll decline, dead-panning, “No tanks, alcohol maksh me tauk and wauk funny!”

 A = Attitude Sets the Mood

Of all the limitations brought on by ALS, we still have the ability to choose our attitude.

Be honest with yourself about your expectations for each situation. Choose to be positive, open, forgiving, and loving.

I eat more slowly now and have swallowing issues. So, when I’m at a social event involving a meal, I focus on what’s around me, rather than stressing out about trying to keep pace. I soak up the atmosphere, enjoy the people, and don’t mind carrying my meal home in a box. 

R = Recovery Time

When pushed to the limit, even the best of attitudes can turn crabby.

Good humor sours into sarcasm and suddenly we’re the holiday Grinch. Our bodies and minds need recovery or downtime after every big event. Know your own signs and symptoms of fatigue. Consider having a pre-arranged signal with your partner that lets them know when you are ready for a break.

Sometimes a nap or restful night’s sleep may be in order. Other times you can counter the over-exposure to noise, people, and excitement with quiet “Me Time” activities.

I find avoiding technology and refreshing my senses with views of nature, sounds of soothing music, and spending time in a low-light environment help me relax and rejuvenate.

Here are a few more tips to help boost your energy and well-being.

M = Mindful Thoughts & Action

Being mindful is the art of keeping our thoughts in the present moment while monitoring our body’s level of tension or relaxation.

Throughout each day I remind myself to drop my shoulders and breathe. Awareness of my breathing brings me back into the present moment.

Using the simple C.H.A.R.M. list helps me when preparing for the holiday season. In fact, it helps me all year long! This year, let’s all create a season filled with joy and with good memories.

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Dagmar Munn
ALS and Wellness Blog

“The best way to cheer yourself up is to try to cheer somebody else up.” 

Mark Twain

A version of this post first appeared as my column on the ALS News Today website.